The harms of unnecessary “Lyme anxiety”

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Lyme disease is a curable infection according to global scientific consensus. It can be diagnosed via testing or symptoms such as a characteristic rash that occurs in the vast majority (70-90%) of patients.

Lyme bacteria (Borrelia burgdorferi) also takes 36-48 hours or more to transmit and is fairly geographically and seasonally restricted. Borrelia burgdorferi does not release harmful toxins, and deaths are extraordinarily rare.

However, the American Academy of Pediatrics warns:

Misinformation about chronic Lyme disease on the Internet and in popular media has led to publicity and anxiety about Lyme disease that is out of proportion to the actual morbidity that it causes.

Scientists have witnessed for decades how people have been falsely diagnosed with Lyme disease, in particular those with medically unexplained symptoms, including Chronic Fatigue Syndrome and Fibromyalgia.

In a 1998 study from Yale of 209 patients with Lyme diagnoses, 60% never had Lyme disease. In that group, patients had a median of four Lyme tests, seven doctor’s visits, and 42 days of antibiotic treatment. 55% had at least one minor adverse drug event and 6% had a major adverse drug reaction like C. Diff. Depression and stress were very high in the group, at 42% and 45%, respectively.

Sometimes lengthy lists of non-specific symptoms are used to justify a false chronic Lyme diagnosis. Research has found that these lists are not helpful because such symptoms are common in the population. Dr. Harriet Hall reviewed one of these symptoms lists and wondered if it could be used to diagnose everyone with chronic Lyme disease.

The following is an excerpt from the 1998 book Lyme Disease about the phenomenon of “Lyme anxiety”. It’s still relevant today, especially given the role of social media in spreading even more unnecessary anxiety and false information. The section is by Dr. Leonard Sigal, who has written extensively about Lyme disease misconceptions.

Lyme anxiety is common in and near areas endemic for Lyme disease. There is widespread concern that Lyme disease is incurable and that this infection can only be brought into temporary remission and will continue to flare.

With widespread anxiety about Lyme disease has come Munchausen syndrome and Munchausen syndrome-by-proxy in those concerned about “chronic” Lyme disease. The psychologic and financial costs of the misdiagnosis and treatment of “chronic” Lyme disease are staggering but have not been considered in most discussions of the public health burden of the mismanagement of Lyme disease.

In some of the patients with “Lyme anxiety,” no objective evidence of inflammation or infection is found, preceding or current, and serologic evidence of prior exposure to B. burgdorferi may or may not be present. Quite often, a low-positive ELISA result is the only such evidence, raising concerns of false-positive serologic testing. Not infrequently such patients have sought the advice of support groups or local “Lyme disease experts.”

This category of illness represents an enlarging majority of the “chronic Lyme disease” population. Such patients have often been tested repeatedly, often with tests of no value (e.g., urinary antigen tests), and have been subjected to many courses of antibiotics, often with agents of no proven efficacy. Many patients have found a place in their personas for “chronic Lyme disease,” and this may be the most permanently damaging aspect of Lyme disease.

In response to anxiety about Lyme disease has come a trend toward antibiotic regimens of greater duration or dose and combinations of antibiotics. However, this increased exposure to antibiotics results in a greater risk of adverse reactions to therapy. Not infrequently, drug side effects have been misinterpreted as manifestations of Lyme disease and occasionally labeled as “delayed Herxheimer reactions.”

Diarrhea in the setting of chronic antibiotic therapy has been called “Lyme colitis,” an entity that has never been described in the peer-reviewed medical literature, rather than Clostridium difficile enteropathy; several patients with this condition have responded well to vancomycin therapy, prompting some clinicians to claim that vancomycin is a cure for borrelial enteropathy.

With the emergence of enterococcus and perhaps Staphylococcus aureus resistant to vancomycin, the unnecessary use of this agent is to be avoided. Especially in patients receiving long-term antibiotic therapy, further antibiotic treatment is not warranted.

A detailed evaluation to ensure that no other illness is present is needed, with special attention to possible fibromyalgia. Such patients need reassurance and education, not medication, to feel comfortable with their new understanding that they do not have Lyme disease.

Dr. Paul Offit has said “While it’s very easy to scare people, it’s much harder to unscare them.”

Videos by Dr. Sigal

What Is “Lyme Anxiety?”

Treatment Approach for Patients with Potential Lyme Anxiety

 Why Might Lyme Disease Be Overdiagnosed or Overtreated?

Consequences to Long-Term Antibiotic Therapy

Other videos

See full article: How Chronic Lyme recruits followers

Risk Bites: Why Aren’t We More Scared of Measles?

More discussion of risk at SciMoms.

Other resources

ScienceNews: Five reasons to not totally panic about ticks and Lyme disease

Caputo GM. Lyme anxiety. JAMA. 1991;266(3):359.

Shapiro ED, Gerber MA. Lyme Disease. Clinical Infectious Diseases 2000;31:533-542

LymeScience: Medical Child Abuse

Sigal LH. Misconceptions about Lyme disease: confusions hiding behind ill-chosen terminology. Ann Intern Med. 2002;136(5):413-9.

Sigal LH. Summary of the first 100 patients seen at a Lyme disease referral center. Am J Med. 1990;88(6):577-81.

Rorat M, et al. [Growing boreliosis anxiety and its reasons]. Psychiatr Pol. 2010;44(6):895-904.

Melia MT, et al. Lyme disease: authentic imitator or wishful imitation? JAMA Neurol. 2014;71(10):1209-10.

The Guardian: Health anxiety is not a joke – it can ruin lives

Bustle: Health Anxiety Is Way More Than Being A Hypochondriac — And It’s Way More Common Than You Think

Anxiety and Depression Association of America: Health Anxiety: What It is and How to Beat It

Anxiety and Depression Association of America: The facts about health anxiety

SciMoms: Risk in Perspective